Hepatologist Consultation and Treatment Decision

This will be a short version.  Much covered within my hour consultation, leaving my head spinning! LOL!!!  Wanting to put everything down here, but will just touch lightly on each point.  Arrived at the meeting with intentions to not treat for at least 3 yrs; re-evaluate condition at that time; & possibly go for another 3 or 4 yrs (my goal, 7 yrs). Now - Unsure!

As a member suggested last week, re-read 'supplement' thread.  Interesting/informative!  Printed a couple lists off to discuss @ consult (hope that is acceptable to print info :o))  I've put a lot of hard work and effort over the yrs in staying healthy & fit, and the results of which I've been quite proud, but was unfamiliar with some of these products, as I've not focused specifically on liver health. (There's been no need to until dx - lol).  By the way, he noted it was an excellent list - - he believed it to be conservative & would not be harmful & most likely be beneficial if I chose to wait.  There was discussion of diet & exercise & he gave me the name of a person with whom I could consult further if i wished!!  (There's a lot more to our discussion that perhaps I can put down in the future.)  He is such a kind man.  He shared his & his wife's healthy lifestyle & how she has studied the more 'natural' approach to health for years!!!!  His adult daughter & her family have chickens (eggs) & honey (yes, the bees! LOL!!) There is just way too much to put down....

to be continued....

[SandyBreeze]

Now the BLOW!!  contrary to "healthy" .. he had a compelling argument for my treating NOW!  I have a lot to consider.  My company is sending me to the Florida Keys on business in nine days for two weeks; and he has asked that I give this serious thought while away, and we've set up an appointment to meet again upon my return!  He was quite patient as I discussed personal information, detailing plans of my advancing in the company over the next five to seven yrs, allowing me evenutally more personal time - (a future time for treating!! lol)  And that, I did not want to give up traveling or down time.

He believes that I have a lot of pluses going in - - low viral load; liver panel normal over the years during physical check ups, and now panels only in high 40s; age; sex; good health; etcetera.  He believes that although a 1b, I fit into a shorter, simplified treatment - - a 24 wk duration opposed to 48 wk.  

This is where the members here fit in, if you're inclined to give personal opinions.  (Those waiting, treating, and post treaters).  He anticipates with my low viral load (120,000) and health that I will be a rapid viral responder and can treat in half the time.  If I consent to treat, he wants to PCR me a few days after my second shot (??)  instead of waiting four weeks.  He said in the olden days they would wait much longer.  

He had me do more labs the folllowing day (Fri).  Another viral load and ANA (??) and feritin? And a few others for good measure!  Five vials (LOL!!!)  I told him this sounded wierd and 'iffy' and only wanted to treat once.  He mentioned if I 'ran scared' with  the thought of 24 wks, and tested neg after 2nd shot, he would, if I insisted and was feeling well, add 36 more weeks (totally 38) - - where I would still be treating two & a half mnths less than standard.  He is optimistic that I could continue working.  There are sx he said I would experience but felt that the time was relative short before it would affect my work.  (I can go over those with you members at a later date).  Our company doesn't require us to put in more than six hours per day so that is a plus as well.  My problem is traveling abroad.

He mentioned he felt quite comfortable with my decision in waiting and I had the luxury of time.  My bx was 0-1 (his nurse originally said 1).  He says NO PRESSURE! lol.  But was only putting another option on the table that he believes would work in my case.  He has another patient with similarities (and a 1b) that had to quit after 24 wks for personal reasons, and now at four weeks post she is showing negative.

I will come to own decision, at my own time - - I got his take and now would be interested in your comments.

(There is so much more - - but will give that over time.)

Breeze

[jmjm530]

Sandy,

There are compelling arguments both ways, and you're probably pretty knowledgeable at this point on both. Good suggestion to take take some time out while away to think about it.

The 24-week treatment approach is interesting. He's basing this on recent "short course studies" that suggest 24 weeks confers that same chance of SVR with those who have low pre-tx viral loads AND are non-detectible at week 4. That's why he wants that week 2 test, to see how fast you are responding. He will no doubt also do a week 4 test as well. But here's the catch, and something you def want to discuss with him in advance.

Scenario 1 is that you're non-detectible at week 2-4 using a very sensitive test. The plan then as I understand it, would be to treat 24 weeks total. This will limit your exposure to the treatment drugs which is a good thing, especially if you've been reading some of the threads recently on post treatment side effects, some possibly permanent.

Scenario 2 is the tricky one. Let's say you're still detectible at week 4, then what? If you and your doctor agree beforehand that in the scenario of detectible at week 4, you will then stop therapy and go into a watch and wait mode -- then I think this is a viable strategy to consider. However, without a FIRM 4 week stop rule in place, this is what may happen.

So, you do your week 4 test and still have some virus. Maybe your side effects aren't too bad yet, as they often aren't at week 4 anyway. So your doc now says, "Well, Sandy, we didn't quite make non-detectible at week 4" but you're definitely responding. Therefore I can't in good conscious treat you for only 24 weeks but since we're already started, and since you seem to be doing so well, why don't we just continue on to week 12 and see how you are doing. OK, at this point you're on the drugs, your mind isn't exactly clear, your life is sort of upside down with the news, you're confused, so you agree with the guy in the white coat and degrees on the wall.

So now you've already bought into 12 weeks and say at 12 weeks you are non-detectible. Now your doc says that you have an excellent chance of SVR but you must treat 48 weeks. So now what? You've invested 12, etc, etc. It becomes a slippery slope, therefore the thought of treating 24 weeks makes the most sense to me if both you and your doctor come to an agreement BEFORE treating as to exactly what your options are with the different viral load scenarios. At least that way you will have the complete story to ponder when away on business. Because the decision may not be as simple as treating 24 weeks or not.

That said, even if you decide to go 24 weeks, I wouldn't make that decision for at least another six months. The reason is that by that time we should have a lot more Vertex trial data in. And it could turn out -- no one knows at this point -- that Vertex may work in 12 weeks. Well, in that case why treat for 24? In that case, seriously consider waiting the 2-3 years until it hits the market.
If it turns out that Vertex is a 24-week baby, and you'd prefer to treat sooner, then you can still try your doc's 24 week plan. Waiting another six months to get more Vertex data isn't going to make any difference other than it will give you some very important information as to your eventual decision.

All the best,

-- Jim

[copyman]

like i posted a few threads down i believe in the studies that suggest a 4 week undetectable pcr can shorten the tx. i agree with the doc and from what you have posted you seem to be a perfect canidate for the shorter tx, BUT only if unde before or at 4 weeks! you can do what i will do if i decide to treat instead of waiting. you can read my tx plan a few threads down in "treatment with less side effects......"  best of luck to you whatever you decide.

[jmjm530]

In a nutshell, by imposing a strict 4-week stop rule, you're gambling 4 weeks to treat 24. By not imposing that rule, you may end up treating 48. By waiting another six months or so, you may find better cards on the table such as treating 12 weeks or treating 24 weeks with better odds than current drugs.

-- Jim

[Forseegood]

I just hope you can come to some kind of conclusion about all of this (despite the crapshoot aspects of so much of this disease and it's treatments) that your comfortable with...best of luck to you...

[shastri20032003]

Hi Sandy,
For me ,the decision to treat did not take too long since I am being treated for 24 weeks

But if I was GT 1b and  needed to be treated for 48 weeks which is the SOC for now, then I would be sitting on the fence for some time and weighing all the options available to me

If I had a low viral load like yours I would probably consider the 4 wk UND option and if undetectable at week 4,would proceed for the 24 week treatment

And at week 24 if UND would review the severity of my sx's and then decide to either stop or carry on for 48 weeks

But I would definitely sit on the fence for some time after reading all the negative reports on post tx side effects for those undergoing the longer treatment

Seems like you would need to play it by the ear...one stage at a time...
All the best in whatever decision you make
Regards

[jmjm530]

The problem with a "one-step-at-a-time" approach is that it isn't the side effects during treatment that has given many of us the most concern, it's the sometimes persistent and possibly permanent side effects AFTER treatment. Unfortunatly, there isn't always a way to know what will happen after treatment regardless of how well or how not so well you do during treatment. Side effects during treatment, while sometimes difficult to deal with, at least have a beginning, middle and end. But after treatment...

For this reason, setting a firm stop rule seems like one logical course, as opposed to playing it by ear while treating. The problem is that if stop rule isn't firm enough, there will just be too much of a temptation to simply push on after week 4 especially if not experiencing bad side effects. After all, part of the treatment mindset is getting into "warrior" mode and not always so easy to turn off. This is where a good plan, partenered with your doctor comes into play. On the other hand, "seeing how one feels" at a particular juncture IMO is a bad barometer to make a decision on. Especially when under the influence of treatment drugs and a doctor who in many cases is all too happy to continue treatment, because that is what hepatologists do mostly. They treat.

-- Jim

[SandyBreeze]

Thank you very much, each of you.

There's an error with viral load by about a hundred thousand ! LOL.  Although, as I understand it, that is still low. However, I believe the original was 21,000.  No matter.  We did another one Fri.  

Just reading this thread and throughout the forum, it is clear - - post tx sx are something to weigh.  With my stats, the biggest thing to weigh - - being there are no Hep C symptoms, I would hate to be left with post tx sides and/or disabled.  The thought of short treatment and putting it behind me is however intriguing.   If having the virus is on my mind day in and day out, it would be worth treating for peace of mind alone.  If I am able to make the decision not to treat, successfully go on with life as before, and not think of Hep C except at yearly examines, (such as testing liver panels), then my original plan will be best (waiting a few years) and I believe once I have my mind set, I can do just that.  As agreed, I will give treatment considerable thought until my appointment next month.

Your comments have been thought provoking and much appreciated.  I'll keep you informed.

Aloha Michelle! ;-)  - -  I hope your 24 wk treatment is successful and you experience a full recovery from the treatment drugs, allowing your liver to heal post tx without the virus.

The best to each of you where ever you might be with this virus - - waiting, treating or recovering from treatment.

[jmjm530]

I'm happy you're going up to Boston to see Dr. A for a scan. Between that and some more Vertex trial data, you should be in a better position to start making some decisions. And you'll be in even a better position if you're able to wait a year or so for even more trial data. I have the utmost respect for Dr. A, but like most hepatologists, they tend to favor what they do day in and day out, and that is to treat. The top dogs also are very used to people leaning on them for advice so they sometimes tend to just tell you what they recommend without discussing the finer points and alternatives. Always good to keep this in mind, and don't be afraid to challenge his position -- one way or another -- to get a more rounded viewpoint. From what I've experienced, ironically the better the doctor, the more apt they are to take the time to discuss the matter and partnership with you in making a treatment decision.

-- Jim

[bobbyullc]

if i were a 0 or even a 1 or 2 i would wait for new tx. it will be the end of 2007 or start of 2008 when the new data is in. he is only hoping at 120,000 vl and low damage you will clear with short tx time? what is the hurry. you MAY be able to work but maybe not or at least be very unconfortable at work. you have many years to wait and one more is no harm. i had it 37 years and only had a vl of 157,000. there was a post today where vertex was hoping for a 12 week tx with a much higher svr rate. your call. i did tx and cleared but wish now i could have waited.

[bobbyullc]

ps i bet many people out there have a worse biopsy score just from eating mac burgers.

[jmjm530]

Bobby: i bet many people out there have a worse biopsy score just from eating mac burgers.
--------------

Bobby,

LOL. Just re-read Sandy's original post and can't agree with you more. For some reason I originally focused more on her doctor's approached as opposed to the fact that she's "stage 0-1". Revised opinion is that there's no way in h*ll I'd personally treat at stage 0-1 even if Vertex didn't exist. But as we're so found of saying here -- hey, but that's just me.

-- Jim

[mauilady]

Hi!  Boy, considering your bx of 0-1 (you lucky buggah you!), I would definitely wait for the new drugs.  Also, considering your job, it sounds like you really can't take the risk of being knocked back for any length of time.  No one knows how the sx will affect us; everyone's different.  You've already got so many positives going for you as far as your health and lifestyle go, why jeopardize everything?  These drugs can really do a number on your body.  I'm 1b, initial vl of 643,000, bx 2-3, and I'm in my 10th week of a 24-week session (it was reduced from 48 weeks).  And all I can say is: I'm glad I don't have a full-time job.  Most of the time I'm pretty ok, but when I crash, I crash hard.

Aloha, Michelle

[copyman]

thanks jim great advice as usual . i'm going to try and hold off tx until next year at least. all depends what the fibroscan shows, my doc is going to get me to see Dr A in boston in the next few months. also i will be getting the results of the CRS test this week. both of these may scare me into starting tx earlier if they come back less then favorable.

[thc]

I tested positive for hep c when i became preg, thinking back i was probally positve at least 3 years prior when i was diagnosed with mono nucl... and elevated liver levels 3 years prior.; i have known since 2001, and still have not gotten treatment.  I read as much as possible about the disease. I am 39 , have 3 children,16-11-6 I don"t want to be sick or "more sicker" than i am now
for fear of missing out on their child hood. I also wonder if i do nothing will i even be able to see their child hood though, especialy my 6 year old. They dont know i have hep c. and i am not sure they should. I am no longer using drugs and haven.t for over 10 years now, and do not wish to ever allow them to know I did./ my daughter {15} is smart and will figure it out if i confide this to her, or have to explain why im sick from medicens. My husband is my secon husand and he knows although he has not been tested nor has he been involved with drug use and proclaims he is fine and does not have this... i truly believe I have not transmitted this to him sexually. i know i am begining to suffer side effests from the disease. Im freaking exhausted most days ive gained 50 pounds in5 years and i think im loosing my mind most days, lately ive had this scratchy dry throat thing causing me to gag especially at night. and i don,t sleep well at all every hour on the hour i wake up and it takes me twelve hour at least to function each day with maybe one or two days i feel pretty good :for a while:  then my energy level just dies. but im thinking thats gets me by for my kids i do things with them these days. And my next issue is i don't want any of our friends to know about my past  so if i start treatment what to say???